ANA Discussion Forum
General Category => AN Issues => Topic started by: Debbi on March 15, 2008, 07:18:42 am
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I am now 10 days post diagnosis and am feeling pretty well armed for whatever comes next. Special thanks to the people on this forum for being so supportive, offering to share their stories, and providing wisdom in what feels like a really crazy time.
I have already heard from Dr. House at HEI and his take was that I'd need translab with major goal to preserve my facial nerve. Apparently this sucker is long and is "impinging" (nice word) into the brain. Okay, that freaked me out a little! I am scheduled to see two other teams this week, including the Golfinos/Roland team at NYU.
It is sounding like surgery may be my best option, but I am still keeping fingers crossed that I might be a candidate for GK - we'll see.
I am thinking that if I have translab, I might consider having a BAHA "installed" at the same time. Any experience/thoughts on this? I still have pretty good hearing in my right (AN) ear - 75% speech discrimination - so expect that it would take some time to get used to SSD.
It's amazing how much I've learned in a short amount of time - two weeks ago I didn't even know what an 8th cranial nerve was, and now I've got a tumor on one!
Hanging tough in NJ!
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Debbi -
for only 10 days post diagnosis, you are handling things very well. Being told you have an AN, once you figure out what that is, is very shocking. Making a treatment decision is very stressful, but it sounds like you are going about it the right way.
House has a very good reputation, and I've heard a lot this past week about Golfinos/Roland so I can tell you that you are consulting with doctors who have a lot of AN experience. Make sure you look into GK as well as surgery if that is an option for you. I had surgery, but lots have had GK and are very happy with their decision.
Some doctors don't do the BAHA surgery at the same time that they do the AN surgery, so if you are thinking you'll go that route, talk to the doctors about it. I had my BAHA implant 9 months post op (would have done it much sooner if I wasn't waiting on my insurance company) and I'm finding it is one of the best things I've ever done. If you have to have yours post op, don't worry - it is a short, simple procedure and IMO it's not painful at all.
Let us know when you reach your final decision,
Jan
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Hello Debbi - from a fellow Jersey girl!
It seems to me, if you have Translab and are able to get the BAHA implant at the same time, it would speed things a long a little. I didn't have my BAHA implant until 9 months after my translab and I would have like to have had it sooner. I guess it's ultimately up to the doctor, but I'd ask about it.
Sounds like you are really doing your homework and have lots of information in your arsenal. That will help a lot! (We Jersey girls are so smart....).
Good luck with your decision making and keep us posted on your progress!
Lori
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Hi, Debbi:
It sure sounds as if you're on top of this AN thing and have a good attitude, which is crucial. I'm impressed. Must be that Jersey air! ;)
Translab surgery should be effective and having the BAHA implanted at the same time seems reasonable, if the surgeon agrees.
It really is amazing how rapidly we can learn about something when it's important to us, and having access to the internet is invaluable in acquiring knowledge about a relatively rare condition. It had to be a lot tougher for AN patients 20 years or so, ago when you had to almost totally rely on the doctor with little-to-no personal knowledge of what you were dealing with or what options you may have had. Outcomes tended to be less successful, too. If anyone has to have an AN, this is the best time for it, so to speak.
We all wish you the best possible outcome for whatever approach you ultimately decide upon to address the AN, Debbi. :)
Jim
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Thanks to all who posted - the words of encouragement are invaluable!
I think that, most of the time, I am doing pretty well. There are, however, moments when I am scared, angry, in denial, etc. I also find that my attention span is about that of a gnat and I am likely to forget what I'm doing while I'm actually doing it! This is all part and parcel of stress, I know. Still, it is disconcerting at times.
I am a huge believe in humor, and that is the primary reason why my husband and I decided (within three days of diagnosis) that this invader needed a name - we picked Ethel. (No reason, it just kind of seemed right). Now, I can blame "Ethel" when I get cranky or forget things - it helps to make it less scary. My brother in law, who has a great capacity to find humor just about anywhere, made a litle sign for us with a picutre of a henchman and it says "Death-el to Ethel". It hangs in my office and serves as a constant reminder that humor is great medicine!
And, as bad as this seems at times, I am ever so aware that other people go through far worse things in life. One of my dearest friends is fightin an incurable cancer - that helps put this into perspective for me. Yes, it sucks, but it could suck SO much worse!
Thaks again to all the wonderful people on this forum. I am SO glad I found you!
Deb
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Deb -
I like your attitude - maybe because it's similar to mine ;D
Humor has definitely gotten me through many difficult times in my life - as I told one of my docs after my surgery - I couldn't live without it.
I can also relate to your "others have it worse than I do" perspective. Not a day goes by that I don't thank God that I walked away from my AN without serious issues - my SSD doesn't count.
I have no doubt that you are on the right path in dealing with your AN. You'll make your decision, follow through with it, and start getting on with your life.
Deciding on a treatment did a lot to relax me and ease my mind; I hope it does the same for you. Put yourself into the hands of whomever is going to perform whichever procedure you choose, and have faith,
Jan
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Thanks to all who posted - the words of encouragement are invaluable!
I am a huge believe in humor, and that is the primary reason why my husband and I decided (within three days of diagnosis) that this invader needed a name - we picked Ethel. (No reason, it just kind of seemed right). Now, I can blame "Ethel" when I get cranky or forget things - it helps to make it less scary. My brother in law, who has a great capacity to find humor just about anywhere, made a litle sign for us with a picutre of a henchman and it says "Death-el to Ethel". It hangs in my office and serves as a constant reminder that humor is great medicine!
Hi,
I am sorry you are going through this but do know that chances are you will get through this just fine. I just thought that I would let you know also that my son after diagnosis made a joke of the MRI of the tumor, he and my ex tried to match it to the shape closest state. I think they decided it was the shape of Alaska. I can remember getting mad and telling them that wasn't funny. But really it was and it was a way to let off steam. Now that it is over, it is funny.
It is strange but our surgeon was extremely cautious and it sort of freaked us out. He did not have much of a sense of humor and he was very careful to tell us the worst. He is a caring and very gifted, experienced surgeon but the bedside manner was sort of terrifying. So, later at one of Eric's follow up appointments, Eric was telling him that I was worried about him being cleared to drive because he didn't have much of a voice and the surgeon made a joke about making hand gestures. LOL After the stress of the surgery was over even the surgeon was making jokes. I guess my point is HUMOR HELPS. Good luck. I am sure you will be fine. Peace and Love and Rainbows.
Robyn
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Did someone mention BAHA and humor in the same post? Oh, boy. ;D
Deb, I do hope you get a chance to consider radiation. Is probably the the best shot at preserving your hearing, and at 75% recognition, yours is good enough to make it worth hanging onto if possible. 18 mm, even if it is heading into the CP angle, is well within the normal size range for radiation treatment.
The only real drawback I see is that you wind up with an ordinary hearing aid, like the one I will be trying out in a few weeks. They are high tech enough, but they still just sit on your ear - or in it. The BAHA, on the other hand, is a hearing device mounted on a post that is stuck into your head.
As Jan and Lori will confirm, I am very jealous of this, as nothing is cooler than having a post mounted in your head. I am almost tempted to see if I can get my hearing aid mounted that way. There are additional delicious details involved in the initial covering, and the daily cleaning rituals, as noted in other threads. See, for instance,
"My BAHA Hat", http://anausa.org/forum/index.php?topic=6035.0, or
"I can't remember!!! (BAHA)", http://anausa.org/forum/index.php?topic=5917.0
From my point of view, you can't lose. Either you have radiation and keep the hearing, or have the trans-lab and get to wear a BAHA. 8)
Steve
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Well, gosh, Steve, when you put it that way... :D
Hey, thanks again to all of you for the sense of humor!
I am meeting with Dr. Golfinos at NYU later this week, as he does both GK and surgery. Still hoping to have options, but whatever happens - happens! And, hey, having a hook to hang things on might come in handy...
Deb
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Deb -
glad to hear you're seeing a doc who does both surgery and GK. Although I picked surgery, there's a lot to be said for radiation - and as Steve suggests for an AN your size it might be the right choice for you.
Let us know how it goes,
Jan
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Debbi,
The hook to hang things on might work - but if you were planning on it being magnetic - don't get too excited. I was hoping to be able to stick a refrigerator magnet to mine so maybe I wouldn't keep forgetting my shopping list at home when I went to the supermarket. No such luck.
It (or the processor) did set off the alarm at Best Buy the other day. They thought they had just forgotten to deactivate the sticker thing, but it went off again so I had to show them the thing stuck to my head. I think they were a little confused! Yeah, I'm shoplifting things by snapping them to my head - that's the only reason I have this metal thing in my skull!
Lori
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Seriously, Lori ??? The alarm actually went off ??? OMG, my kids will be so embarrassed if this happens to me. Then again, it might get them to stop bugging me about taking them to the store so I can buy them things.
Who knew that the BAHA will not only let us hear better, but it has the potential to save us countless dollars by keeping us out of the stores LOL
BTW, I think you have some great marketing ideas (magnetic hook, antennae, Dawn detergent, etc) you may want to contact Cochlear America and see if you can patent some of them.
Jan
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It was weird, because the alarm went off the first time we were at Best Buy - I try not to go in there much - it always costs too much money - but I went again last Saturday and was all prepared for it to go off again on the way out - and it didn't. Very strange - but I think I'll use it as an excuse to stay out of there anyway!
You know, I think I have some brilliant ideas too.... so far you're the only one who agrees though.... :-\
Lori
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Well, who knew that the BAHA has so many advantages/uses!! :D
I have my first face-to-face with a team yesterday who do both CK and surgery. They confirmed what HEI said that I am not a candidate for radiation because "Ethel" is pressing into my brain. Oh well. Looks like translab or retrosig for me and Ethel.
Apparently Ethel is shaped kind of like the Hiroshima mushroom - she pops out of the canal and fills up all the remaining space. It was actually pretty interesting to have the neuro guys explain the MRI in detail to us. It also seems that Ethel has a cystic center - anyone know anything about this? The neuros didn't seem to think it was any problem and might even make it easier to "collapse" the tumor.
I must say that I was completely exhausted after yesterday's appointment - my brain was FULL of info (not to mention an AN...). My husband, who is my rock, was with me and tooks tons of notes.
My next appointemnt is at NYU tomorow - looking forward to this because I have heard so many good things about Golfinos. Wish me luck!
hugs to all,
Deb - still hangin' tough in NJ
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Hello Debbi,
So sorry to read about your situation, it is a shock isn't it....
I am sure you will be able to make the right decision once you have all the relevant information in front of you. Has anyone mentioned any form of hearing preservation surgery or is that out of the question because of the AN's position? It is a shame its pressing on your brain already...
Mine looks mushroom like (or top heavy ice cream cone!) . Don't know about the cystic centre... have you been on to the cyberknife website - it is a good source of information where you can post questions.... http://www.cyberknifesupport.org/forum/
Good luck with your appointment tommorow.
x
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Can't wait to hear about your meeting with Dr. Golfino's, you can either post here or send me a private message, remember calling is always an option. Wishing you the best.
Joe-
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After two full days of talking to brain docs this week, I have reached a decision and am having translab done at NYU by Drs. Golfinos and Roland and their team. Wahoo! The booger is coming out - i am having a "boogerectomy!!!"
These guys impressed me so much that it made the decsion easy. All three surgeons were unanimous that radiation isn't an option given the size and position of Ethel. And, also unanimous that hearing preservation isn't a realistic goal. So, translab it is - look out SSD World - here I come!!
Pending final confirmation of the surgical schedules, I am tentatively scheduled for the morning of April 16 - which I will offically designate as my lucky day!
I'm going to have about a zilliion questions about post surgical recovery, but will compose my thoughts before I post.
Deb - Ready for the Boogerectomy!
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dont sweat the SSD,it's has'nt been a big deal for me and I work in television with audio/video.
the hardest part to get used to is when someone yells out your name and you have to determine
where it's coming from,other than that no big deal,at least for me.
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Deb -
congratulations on reaching your decision! It's a great feeling to have all your hard work and research pay off. Having all three docs agree is very reassuring and I can tell by the tone of your post that you have a lot of confidence in them.
SSD isn't a big deal for some, they learn to adjust very well; but if you find it too frustrating for you, there's always the BAHA or TransEar.
Three cheers for booger removal ;D
Jan
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;D Thanks, Satman and Jan - you have already made me feel better!
Deb - Future Postie
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Deb -
Glad to hear you're getting your "Ethel-ectomy". Ethel might not be too glad, but we sure are!
Try not to drive yourself too crazy with questions and "what-ifs". You've got a good team of doctors and you'll be in good hands.
On April 16th, I'll be flying to Arizona to visit my in-laws. At least you can consider that day YOUR lucky day... :P
Lori
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Lori-
Don't make me start with "mama" jokes....
Joe-
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Oh Boy, Another Deb with a sense of humor with another Brain Booger. We're having fun now! I just thought Ethel would enjoy a laugh at me former booger that usta inhabit me old brain pan! Enjoy!
(http://i235.photobucket.com/albums/ee60/Captdeb_photos/PirateMRIPirateMRIjpPirateMRIjpP-1.jpg)
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Debbi,
I love your attitude. You will do fine! Happy thoughts coming your way!
Hugs,
Brenda
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Hello All~
Debbie, I am glad you have made a decision and have set a date! I think that is the hardest part. Poor Ethel...at least we will still be able to BLAME things on her...if it were my girlies they would say, "Ethel MADE me do it!"
Lori~ You just make me laugh out loud!! You are so funny! I,too, think you have GREAT ideas!
OK, since satman brought up not being able to distinguish when someone yells your name, I have to tell y'all my newest story!! We went to Baltimore for the consult on my surgery and we were staying at a friend's apartment (well, really we didn't know her, but her parents). We were going to meet her for breakfast Wednesday morning and came outside to get in the car. A lady (I hate to say this, but pretty "masculine" looking) was outside about 3 doors down (in front of where our car was parked) -- I heard a VERY HIGH voice say, "hello!" and i thought "WOW! That was NOT the voice I thought would come out of her!" but she was the ONLY other person around. She came walking toward us and pointed up into a tree at a PARROT!! It was the parrot who had greeted us! The lady then went on to tell us that the parrot "Goldy" had a thing for blonde females!! I walked on to the car b/c my arms were full of stuff -- right as I got there, a flutter of wings were everywhere all around my head!! I ducked down (I'm sure that there was some screaming or at least yelps) and when I looked up, Dave was holding a parrot on his finger!! How crazy is that? I guess she wanted at the blonde girl!!! I told Melynn that we wouldn't have been late if I hadn't of been accosted by a PARROT!!
OK, that really didn't have anything to do with anything, but I thought it was funny!!!
K
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K -
If you had said you'd been accosted by anything else in downtown Baltimore, I would have thought nothing of it - but a parrot? What are the chances??
Joe, go ahead... you can do some "mama' jokes - it'll give me something to think about and laugh at as I'm getting off the plane.....
Lori
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Deb -
On April 16th, I'll be flying to Arizona to visit my in-laws. At least you can consider that day YOUR lucky day... :P
Lori
Deb is definitely getting the better end of the deal - I'd take a boogerectomy over my mother-in-law any day LOL
Oh wait, she's now my EX-mother-in-law; much better than I thought ;D
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Hey, you gals (and guys) are all cracking me up! Thanks so much for the opportunity to laugh - it is the best medicine!
I got final confirmation last night that I am definitely on for the 16th of April for translab. I can't believe that I am saying this - but I am really excited to have a date (as I said to Kay - when did it become exciting to have brain surgery????) :o
Capn Deb - I LOVE your post boogerectomy MRI!
Chillin (literally today) in NJ
Deb
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I got final confirmation last night that I am definitely on for the 16th of April for translab. I can't believe that I am saying this - but I am really excited to have a date (as I said to Kay - when did it become exciting to have brain surgery????) :o
Deb
Most of us felt that way !! ... once a date was set .. it was a relief !! a relief to be know after that BIG day .. (most) of my issues would go away forever!! I now refer to that date as BS .. (Before Surgery) ;D ;D
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Hi Debbi,
Wow, your surgery is coming fast! I think that must be a relief.
I am still waiting on my consultations for both surgery and GK.
Do you have some symptoms/issues that make it necessary for a speedy remedy or is that just the way it goes in the US (i am in Toronto Canada)?
My AN is a bit larger than yours (2.9cm) and orginates in the CP angle, so there is already "mass effect" on the brain stem. Is this also the case with you and the reason why radiation is not an option for you??
I am meeting finally with GK doc this week (and surgeon the week after) so finally i will have an answer to all my questions, but I can't help but find i am still looking for some indications in advance as to what my options will be.
Thanks for your humour and insight. You are so right to say that it could be so much worse than a benign, treatable tumor. I wish you a safe and speedy surgery and recovery. Soon you will be one of those people who is here is guide other newly diagnosed people through this.
Thanks!
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AAAARRRR!!!!! Me surgeon left that little feller in thar to guard aginst the return o the dreaded booger! Nice bloke aye???
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/emoticon___pirate_by_anya1916.gif)
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Hi Calimama -
Great city - Toronto! One of the cleanest and most beautiful cities in North America.
In terms of the speed of treatment, part of that is my own desire to get this done with and get on with life. And, part of it is that the booger is pressing into my cerebellum and the facial nerve is stretched across the top of it. No one has recommended waiting, and even the GK guy said that radiation really wasn't a good option for me. What I think I've learned is that it is as much the configuration and exact location as the size that directs treatment.
I was really, really lucky to be able to get into see two treatment teams within two weeks of diagnosis. In addition, I sent my MRI CD to House Ear Clinic in LA and they got back to me within 24 hours. All of this, along with a pretty consistent opinion that translab was the way to go, made my decision fairly easy.
As for other symptoms - none, really. I have had some occasional balance issues in the last year (which I incorrectly attributed to getting a little older and not doing my yoga as consistently as I should!) Other that that, my first indication that something was amiss was about 6 or so months ago when I started to become aware of decreased hearing in my right ear. Of course, I assumed it was just aging and genetics (my dad went suddenly deaf about 35 years ago) and put off the ENT visit until March. Don't think it would have made a lot of difference if I went sooner - and can't worry about it anyway at this point.
What you've probably gathered from reading a lot of the posts on this forum is that a sense of humor is really important. If also helps to "de-scare" this thing we've all got. It's a bump in the road of life - not the end of life!
Feel free to PM me if you want to talk further. I don't have a lot of answers, but I do have a lot of optimism (okay, and sometimes a fair amount of fear!)
Debbi (and Ethel - but not for long!!)
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Debbi,
Thanks for your reply and nice words about Toronto. Most Americans seem to have wishful ideas about the city. I have lived a few places (including Sydney, Australia - paradise!) but Toronto is pretty cool... particularly the way that so many people of so many different backgrounds seem to live in harmony (for the most part). I understand it is not as clean as it used to be, but i guess everything is relative.
I am sure that you had so many opinions pointing in the same direction helped make your decision easier. Sometimes i think that is the best case scenerio, other times i just think i want options! Anyway, i hope i can get some clarity about my little 'intruder' next week when i meet with the GK guy. I wonder if the AN is all wrapped up in the facial nerve?? I have no idea. Gosh i hope not.
Anyway, thanks again for your support. We will all be wishing you well in the journey ahead and looking forward to good news from you from the other side.
Yoga sounds like a good thing to take up these days! OOOmmmm OOOOmmmm OOOOmmmm.... ;)
take care...
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Debbi
That is great news. I have April 16 marked on my calendar. Please know that you have a great group of people here on the post-op side to bounce questions off -- no matter how crazy they may sound.
BTW, K's T3 is this Friday -- are there any other "boogerectomys" or T3s scheduled soon?
And I thought you might all enjoy this -- I shared the "brainbooger" terminology and Capt Debs MRI with my Hollywood friends. They just shake their heads and say we have a dark sense of humor. I just half-smile and agree.
Have a great week.
David
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David~
I've done the 1/2 smile thing for years now and made MANY jokes about it -- it just hit me when i read your post that MAYBE I wouldn't have it anymore...don't want to get my hopes up...but MAYBE...
K
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I'm praying for you, K.
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K - your half smile is better and means more than any full smile I've ever seen! But I can understand how much it would mean to have the whole smile back - so I hope your surgery is a success and your smile is lighting up the whole state of Texas in no time!
Good luck to all with their upcoming surgeries!!
Lori
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Lori~
Shucks..you make me blush!
Hey! What ever happened to that phone conversation???
K
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I'm scheduled for my "boogerectomy" on April 2nd at Hopkins! 9 days yikes! starting to move into that last minute panick phase.
Hope
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I was just about to put this date up b/c I remembered that David had asked, but I couldn't remember which thread it was on...LOL!!
K
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Okay, by my calculations, we have at leat two boogerectomies and one T3 scheudled within the next 3.5 weeks.
Anyone else want to get in on the fun?? 8)
Deb
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:P Just got word that my boogerectomy has moved back one week to the 23rd. Disappointing, but I'll just have to find ways to keep myself REALLY busy between now and then so I don't go nuts!
Deb - enjoying springtime in NJ
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Okay, by my calculations, we have at leat two boogerectomies and one T3 scheudled within the next 3.5 weeks.
Anyone else want to get in on the fun?? 8)
Deb
No thanks Deb! I'm staying away from sharp objects aiming for my head for a little while! Which reminds me, I need a hair cut.... :-\
K - that phone call is coming! Between your jet-setting and my kids running me from one place to the next - I think I should find a way to just attach a phone permanently to my BAHA attachment... hmmm... is that another one of my brilliant ideas...
Lori
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Now that is a good idea...unmfortunately, the market is not a HUGE one...
K
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Do you have me down for April 17th? Do I get extra points since good ol NF2 is making this my 4th surgery. 3rd tumor and 1 CSF leak. It's still nervewracking in some ways and easier in others as I do have a clue what to expect.
Then May hopefully the cochlear implant for the extra bonus round.
Cheryl R
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Cheryl - I think you win. You're such an over-achiever!! :D
Good luck to you on the 17th! I hope all goes well and you're feeling good in no time!
Lori
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You win, Cheryl - although I think hitting the brain surgery trifecta is a bit of an over-achievement!! ;)
So, we've got Kay on Friday, Hope on the 2nd, Cheryl on the 17th and me on the 23rd. I'll be the rear-guard - any other particpants?? (In this fun AN game of ours...)
The Robin Red Breasts have arrived in NJ - spring can't be far away!
Debbi
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This is one over achiever event that I would rather pass on. I am more nervous in some ways this time as will mean the loss of the vestibular on my good side and I am worried over what it will be like after. I have never had dizziness ever with any surgery and up walking with ease right away but am scared this time won't be as easy. Time will tell. I am just trying not to think of it too much as worrying now won't make a difference good or bad for after. That is easy to say now but harder when it is the middle of the night when one wakes up and gets to thinking.
Cheryl R
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Cheryl~
I am praying for peace for you -- I'm sure this is even harder in way since you have been there before!!
K
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Cheryl, I know exaclty what you mean about that internal voice in the middle of the night. That is when all my fears come to the surface. I've never been a particularly "good" sleeper under the best of circumstances, and now is definitely in the bottom 5.
Just keep trying to keep positive thoughts. Don't know if you ever practice any sort of visualizations - but that can help, at least from an anxiety standpoint. For me, I visualize sitting alongside a canal in Venice with my husband - it is a very calming memory for me and sometimes helps me to manage anxiety.
Keep trying to find something positive in each day and laugh as much as you can - it really does the body good!
I and lots of other people will be sending you cosmic hugs, prayers and all good thoughts.
Deb